Are you the parent of a child with special needs? If so what has your experience involved? What challenges have you faced? If you want to discuss parenting children with special needs here is the place!

Hi there I don't have any children with special needs but I did read what your son has. I had to study this for a human development paper I did. I wsh you the best of luck with him.

It's still a big shock for us knowing that our son has what he has. We aren't quite sure how to comprehend it all and no parent wants to see their child suffer. That seems to be the hardest bit to accept; that over time our son will deteriorate. We are trying to be positive though as we know that medicine is a grey area and there is the possibility of surprises. Some good and some bad

I would be interested to hear about any information you have mummy_becks.
I have read what information there is on some websites but I find it hard to determine what info is accurate and what is not. If you have any helpful info please let me know. I would be very greatful. Many thanks.

No worries I will hunt it out for you. I had to make sure my stuff was from good sources so willg et it for you. I found a great website as well from Canada about it so will get you the link for that.

Thanks Becks your help is greatly appreciated.

Kerri -Anne I'm sorry to hear about your brother and his best friend. Life just really isn't that kind at times and to good people too. I have experienced a number of bereavements in my time and now with my son getting DMD it just seems like bad things just won't stop happening to my family and I. I might be a carrier for DMD too so if I decide to have more children there might be a 50% chance they will develop DMD if they are a boy and becone a carrier for DMD if they are a girl and subsequently will have the same sort of risks if they decide to have children. I know that life is full of ups and downs and I'm learning to focus on the positives. It's just hard to see the positives at times when bad things happen. Well that's how I feel anyway.

Yep DMD is carried by the female and usually (well 99% of the time) boys get it. You would be able to go and have testing down for that easily.

My 5 year old son has very mild form of autism diagnosed at 22 months. He is non-verbal with some single words and knows how  to count. Loves being around other adults/children and thrives on the attention when someone is interested in playing with him.

maudie23, Thank you so much for your post. I am having a really bad day today and reading your post helps me to put things in perspective and to stay hopeful. My family and I had a busy day yesterday and I think we did a bit too much. I went to bed and just couldn't stop thinking about the fact that my son doesn't even know about what might happen to him over time  but that we do and I felt so terrible for him. I also kept thinking thatat school he will have no friends and that he will get teased etc like I did when I was at school. But you are right you just can't give up  and to read your post was like hearing that song " Don't worry about a thing, because every little thing will be alright." I think I worry more than my four year old son. I didn't get much sleep last night so I'm absolutely stuffed today which I thinnk is the main reason why I'm not dealing with things very well today. By the way my son had Duchenne's Muscular Dystrophy. Here is a link to a web site containing info about what it is etc. I'm not too good at explaining it. Thanks for your support.

kiwigal, I'm sorry to hear that your son has mild autism but it sounds like you and him are doing really well. Did he have any behavioural issues before he was diagnosed? If he had, did others assume that it was your parenting making him have behavioural issues? I had to fight the system to get my son the help that he needs. The organisation that was supposed to provide the help just sent me on a parenting course insisting that there wasn't really anything going on with my son medically, that it was merely my parenting that was causing the  behavioural issues. Now though I know that a child suffering from behavioural issues is a symptom of the disease he has. I'm glad you got help sooner rather than later. I had to wait two years to get another appointment with the paediatrician! Now though things are finally improving. It's just sad that in a lot of cases your child has to have something pretty serious before they get any help.

http://www.ygyh.org/dmd/whatisit.htm - here is one site

and http://www.muscular-dystrophy.org/information_resources/factsheets/medical_conditions_factsheets/duchenne.html - here is anpther good one for you.

Hi all

I dont have any children with special needs, but my 9 year old cousin has Downs and DH's 17 year old sister also has downs, his other sister (9years) has mild Asbergers, and his mum has MS.  lol what a bunch we are!   I am a preschool teacher and have also worked for many years with IHC, SES etc working with children who have special needs. so the whole thing isnt entirely new to me lol.

We plan to TTC for our 1st child as of next August or there abouts, and I may be a carrier for the abnormal chrosome that causes a genetic form of Down's.  If i am a carrier I have a 20 percent chance of having a child with DS. (i guess this increases with age too...)  We have decided to not be tested for the gene, as it will not affect our decision to have children.  but it is something i do think about often. i think ill be lurking around this forum a bit

if anyone is in my position or knows anything about any of this id love to hear from you! for now we are just taking one day at a time and trying our best to prepare ourselves financially etc so i can be a SAHM whatever the outcome...but especially if we do have a child with special needs i wll be able to stay at home which is so important to me

sorry for the novel!

ToniR wrote: We plan to TTC for our 1st child as of next August or there abouts, and I may be a carrier for the abnormal chrosome that causes a genetic form of Down's.  If i am a carrier I have a 20 percent chance of having a child with DS. (i guess this increases with age too...)  We have decided to not be tested for the gene, as it will not affect our decision to have children.  but it is something i do think about often. i think ill be lurking around this forum a bit if anyone is in my position or knows anything about any of this id love to hear from you! for now we are just taking one day at a time and trying our best to prepare ourselves financially etc so i can be a SAHM whatever the outcome...but especially if we do have a child with special needs i wll be able to stay at home which is so important to me sorry for the novel!

Hi there ToniR. I have a child that suffers from Duchenne muscular dystrophy which is an inherited gene defect. ( Well that's the way I would explain it anyway, although sometimes the gene defect that causes dmd can happen for no reason at all at conception or shortly after. ) I have been tested for the gene defect  but still do not know my results although it is not looking good. I also have a healthy unaffected son. The way I think about gene defects etc is that there is still the chance that they can happen for no reason at all so even people who may not be carriers for any gene defects may end up with a child or children who are affected in some way. I reckon there is always a risk and even if our children are healthy in every way I believe they are not promised to us forever in a day, sadly. I also feel that if I had avoided having children, had I known I was a carrier for DMD then I wouldn't have had either of my wonderful boys. The road with a child with special needs is by no means easy but underneath the special needs are awesome little children who we are priveliged to care for. In life there are risks with everything but don't let that put you off. Even if it is worst case scenario for you (which I doubt it will be. I know of a mother who was a carrier for a gene defect and only one of her seven children was affected and the risk was 50/50 with each child.) there will still be hope. Having a child with special needs doesn't have to mean the good times end there. And like I mentioned earlier there is a very good chance that everything will be fine. Good luck and all the best for your time ahead.